Personal Experiments to Reduce Uncertainty and Manage Health

By June 20, 2015Caregiver, ePatient
Health consists of one experiment after another.  What works? One of my challenges is neuropathy. People with diabetes and multiple sclerosis commonly have neuropathy. There’s sensory and motor neuropathy. Sensory Neuropathy causes tingling and numbness, pins and needles and hypersensitivity, increased pain or the loss of ability to feel pain, loss of ability to detect changes in heat and cold, loss of co-ordination and proprioception (knowing where your body is. I bump into door jambs), and burning, stabbing, lancing, boring or shooting pains – which may be worse at night. Motor Neuropathy causes muscle weakness – causing unsteadiness and difficulty performing small movements such as buttoning the shirt, muscle wasting, or muscle twitching and cramps.  I have symptoms of both. It’s seriously annoying.

When I told my neurologist about these symptoms he prescribed Gabapentin (Neurontin).  He told me about several placebo-controlled, comparative effectiveness studies (CER) done showing the effectiveness of Gabapentin.  But what does effectiveness mean? Does better than placebo mean 10% better, 50% better?  50% fewer symptoms?  Which symptoms? It’s research (experiments) about populations (groups of carefully selected research subjects).  I tried to pull articles to better understand this, but I would have to pay $30 per article. Gabapentin is for treatment of epilepsy. You need to build up a level of the drug in your system. The doctor couldn’t tell me how it would affect me. That is research of one (me).  I didn’t want to take such a drug. I’m afraid it would dull my sharp mind. So I’ve experimented with non-drug treatments (on myself). I tried to be at one with my neuropathy, not get freaked out by, but become intimate with it. It feels like this, lasts that long. The zen approach. Reducing fear is huge. My symptoms increase when I’m freaked out. I’ve found that massage helps – keeps my muscles looser, manages cramping.  Acupuncture helps. The day after acupuncture treatment the neuropathy is worse, but then better for 3-4 weeks.  Exciting! So I’ve come up with an acceptable routine to keep it at a seriously annoying level and I’m not taking an epilepsy drug. I still bump into door jambs, my left thigh muscles are wasting, I’m quite sensitive to toe and finger heat and cold.
These are experiments – personal research – managing uncertainty – managing my health.  My way works for me, maybe not for someone else.  But the key is knowing my limits and experimenting.  Doing my own comparative effectiveness research.

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